What's it REALLY like - Recovering from Neurosurgery

As Adele would say, "Hello from the other siiiiIIIIiiiiide!"  

I'm officially considering myself recovered from the neurosurgery I had six months ago.  There is a gilded proclamation, signed by the mayor, and all the people of the kingdom are rejoicing.  

Why yes, I do still format my blog like it's 2010.

Ok, not really.  What really happened was a week or two ago I thought to myself, "Huh.  I guess I'm all recovered now.  Cool."  And then it took me a while to decide to write about it.  

The Early Bits

If you read my last post about my recovery, then you pretty much know how the rest of it went.  It was several cycles of, "I'm doing a bit better. Guess I should go down on meds," followed by, "Everything is literally the worst and it all hurts and ugg why am I not as fit and healthy as an Olympian yet?!" with a little bit of, "I'm doing ok, and thankful for what I've regained, and I feel stable."  Luckily, I don't remember most of it.  

From what I do remember, I saw the nerve pain in my hands slowly get better during this time.  My endurance improved quite a bit, quite quickly.  My recovery in general was much quicker than usual, though while I was in the thick of it, everything seemed to take way too long.  The thing that did take longer than usual was getting back to my baseline of meds, but I honestly think better pain control and steroid coverage ends up helping recovery go more smoothly in the end.  I'll have a few extra pounds to lose, but that's life with adrenal insufficiency for ya.  And it seems my parents survived being stuck in the same house as me while I was a grump, so it's a win all around!     

The Middle Bits

Speaking of wins, this is the part where I put together a scorecard of what I gained/lost from this round of neurosurgery.  Overall, I can only conclude it was a huge success. 

The good:

I can finally flipping breathe again!  As long as I'm not laying down completely flat on my back, I basically don't notice any restrictions in my breathing muscles.  

No more leaks!  I've had enough coughing fits (thanks athma!) and sneezes to know that my leak is successfully patched!  

My sitting tolerance is great now.  Basically I can sit for as long as I want.  That's much better than the 1-2 hours of sitting up once every few days that I used to be thankful for.

My neck is much more stable.  I don't have to put my skull back on top of my neck constantly anymore.  My spinal cord is very much enjoying not being squished and pinched.

Unless I'm tired or overworked, I don't really look like I've had a spinal cord injury.  My leg strength is pretty good, I don't trip as much, and I don't look like a drunk zombie T-Rex when I walk.  My adventures have taken me both up and down some very steep hills without much difficulty, which is way more than I expected to ever get back.  

My muscle spasms, while still a problem, are much better.  I think I've only had one or two days in the last month when I felt really incapacitated by them.  

There's probably lots of other good stuff too.  I just don't remember it and it's just normal for me now.  I love when I can take stuff for granted.  

The meh:

That nerve pain I woke up from surgery with is still frustrating.  It's a lot better, but I still have to be very careful how I use my arms or I'm in for a rough time.  I can't throw a ball for my dog, or cook much, or walk with my arms loose down at my sides.  And forget about reaching for anything!  I basically had to stop PT because the exercises flared me up any time I did upper extremity anything.  Every couple weeks I try some light exercises and I quickly learn that it's not time for that yet.  The good thing is that I can finally crochet and draw again.  And if I protect the angry nerves, the nerve pain fades more into the background instead of something that has my attention all the time.  Sometimes I don't even have any pain at all on my left side.  I'm frustrated, of course, but grateful for the progress so far and still hopeful that I'll continue to get better.

Somehow, despite having half a hardware store in my spine, one of my levels is still wiggly.  This really freaked me out at first because in the past it's always meant more neurosurgery.  But so far, this one wiggly level is behaving.  I do get pain and neuro symptoms when it slips "out," but I can almost always get it back "in" quickly and easily.  It's not progressing or holding me back from anything, so at this point it's more like those clouds on the horizon when you are on a camping trip and you aren't sure if it's going to be a big miserable storm that may electrocute you with lightning, or just a bit of wind and a refreshing drizzle.  It's there.  Lurking.  But for now I'm ok.  

My blood pressure still sucks.  I keep thinking my blood pressure cuff is broken, but then I go to the doctor and their cuff confirms I have blood pressure not typically compatible with consciousness.  My body is dead set on losing the fluid I take in, keeping my blood volume too low to support ambitious things like standing or walking (more on that later).  I keep upping the meds that usually help me retain salt and water, but my body is being really stubborn about letting them do their job.  I do have good days, or even good groups of days.  And during those good times, I do meet my goals of walking 1-2 miles.  But most of the time, I'm not doing a lot of standing or walking lately.  

Overall 

Not a bad scorecard.  I always know that surgery won't be a magical fix for everything, but I'll take any improvement I can get.  And I'll be thrilled and feel really lucky for each little bit of my life I get back.  

Speaking of...

This is also the part of recovery where I have an identity crisis because I'm not 100% disabled anymore, but I'm also not working or having lots of babies or traveling the world.  It's been the catalyst for me coming to terms with some harsh realities I've been putting off for a while.  

When I first got sick, it took a few years to adjust to my new reality where being sick greatly impacted my life.  There were tears and lots of frustration and then I came out the other side with a new normal I was happy with.  I actually ended up having the best times of my life during that "new normal!"  

   Then these last few years I've been working on adjusting to the slightly harder reality that being sick isn't just a part of my life, but kind of the main thing.  I have to give up a lot of dreams, maybe not forever, but certainly for now.  It makes me REALLY glad I traveled a lot, moved across the country, lived in NYC, etc. while I was able to.  There's been lots of tears and frustration lately, but I know I'll come out the other side with a new, new normal and hopefully I'll find a way to be happy with it.  People go through this all the time and it doesn't destroy them.  I'll be just fine.  

What's Next?

I think with chronic illness, it's easy to fall into the trap of thinking "ugg, it's always something" when you recover from one major surgery/trauma and then the next issue pops up.  And yes, it is always something.  That's part of the chronic illness package.  But I like to take inspiration from my favorite president in American history, Dr. Josiah E. Bartlet and ask "what's next?" instead.

The likes of him only exist in fiction.

I like "what's next."  It implies both a readiness, a gritty acceptance, and maybe, perhaps, some hopeful anticipation.  When you think "what's next?" the answer could be good, bad, or some kind of mix.  When you ask "what's next?" you are looking life in the eye and telling it you are ready for whatever it throws at you.  

So, "what's next?"

Medically, I have a new issue to pursue.  One of the veins in my neck collapsed probably about a couple months ago (RIP to my internal left jugular), so after a year of having low cerebrospinal pressure from a leak, I now have high pressure.  It's almost a little funny.    That's why my blood pressure is still so bad.  My brain thinks I have really high blood pressure, so it makes me lose more fluid than usual.  And then it's confused because it sent clearly worded notes to my body about the importance of losing all the fluid and it is still being squished, so it sends more orders to lose more fluid.  And then throws a tantrum in the form of a throbbing headache when it is still getting squished.  In addition to blood pressure issues, my vision has been funky, I don't sleep very well, I've become a total ditz (ok, I've become more of a total ditz than usual), and the constant tachycardia makes me really tired.  It has given me the superpower of being able to hear my pulse in my ears though.  So I got that going for me.  

High pressure isn't as much of a bummer as low pressure, but it is definitely not as widely understood or treated.  I had some serious issues with high pressure around 2009-2011 and it was an odyssey to find a doctor who finally diagnosed and treated it.  He has since taken a well earned retirement, and the other doctor I knew of who treats this doesn't treat that kind of vascular issue anymore.  Oh, and I may have another collapsed or partly collapsed vein that drains from my kidney.  So....yeah.  I'll be working on that for a while and hopefully find the right doctor eventually.  

  Non-medially, part of me coming to terms with my sickly reality is giving up on the idea of working in a clinic (at least for now) which means I'll hopefully be starting my own telehealth practice.  I'm pretty excited about it.  I talked it over with my boss and she's going to be really good about accommodations and vacation time and stuff.   She's pretty cool in general.  COVID has opened up lots of doors for sick and disabled people and I think I'd like to walk through some of those doors myself.  It will be a lot of work and it's not a sure thing, but for now I'm enjoying setting everything up.  It will be awesome to work again and use these skills I have to help people and communities.   

 And, then there's all the little daily delights like greek frozen yogurt, or finding a new podcast I like, or crocheting tiny jellyfish.  I have family parties and camping trips, and weddings and lots of great things to keep me busy.  When COVID dies down a bit, I look forward to reassembling a social life.  There's lots of good stuff out there.  

Like cows!

So, with the chapter of my life that is my 8th neurosurgery coming to a close, I put on my suit of bubble wrap, stare down the future with as much grace as I can muster and ask, "What's next?"

What's it REALLY like? - Recovering from a major neurosurgery

Continuing the theme of posting more comprehensive and less curated accounts of my latest neurosurgery, this post will be about what it's really like recovering from said surgery.  I wrote this as of being three weeks post op, and then went back and edited it at just after four weeks in case anyone who is going to have this surgery wants to know the timeline.  

Attitude is everything!  (Or is it?)

First, I want to paint a picture of how I envisioned my recovery.  I got a little competitive about things and decided it was going to be my BEST ONE YET!  I was going to be a little workhorse - exercising my butt off, losing more of that annoying steroid weight, getting back to doing art while still in the hospital, getting off pain meds and extra steroids in record time, and incorporating tons of "best practice" ideas from the ridiculous amount of continuing Ed classes I took on acute/chronic pain and recovering from surgery. (Seriously, I have like double the amount of hours needed this term!)  I was gunna make awesome goals and achieve them in record time.  I'm an OT, after all.  And I've done this so many times before.  I should be GREAT at it!  

Oh, sweet summer child, sometimes the body has other ideas.  

Like being anemic, for example.  Or having no endurance because I've spent so much of the last year laying in bed.  Or having both hands disabled from inflammation in my neck.  Or having tons of emotional issues from med changes.

But that's getting ahead of myself...  

The Warm Fuzzy Part

    First, there was a nice few days at the airBnB condo where I felt things were on track and I was on enough pain meds that everything just kind of seemed chill and happy.  As my doctors suspected, my health improved a lot once I was in control of my own meds and movements again.  I started eating a few well-tolerated foods and drinking more fluids even without nausea meds.  

Can't resist Mom's cooking!

I didn't have to ask anyone's permission to get up and walk, so I did a ton of condo walking tours.  Basically, I'd nap, go on an indoor-walk, eat, nap, go on a mini walk outside, rinse repeat.  Coming from a place where I struggled to make it five steps to the other side of my hospital room and back, this felt great! 

My epic journey to sit by the pool that was like 1/6 blocks away

 I wasn't super functional - I needed lots of help with basic ADL type things and was still too tired for entertainment other than falling asleep to podcasts - but that was ok to me at this point.  I did have a lot of pain, but the meds made me care less about it. This is what I call the warm fuzzy part of recovery.  It's when there's lots of sleeping and meds involved and every little thing feels like a major victory.  It's nice and dreamy and what I console myself with when I'm facing surgery.   Like, yes I have to go through hell, but I have this nice bit during recovery to look forward to.  Usually it lasts a month or two.  Usually I see the end of this warm fuzzy time as the day when I stop taking naps.  This time, that happened day 10 after surgery.  Dear universe, that was way too soon!  I wasn't ready.

Anyway, prior to the warm fuzzy part being over, I did three things of note.  I insisted on going to a craft store while still in Arizona where I'm not sure what I bought, but I remember being excited about it.  It went pretty well.  In an excruciating, but hey at least I'm having fun sort of way.  

Yay!  I got "out!"  Now I'd like a two hour nap, please.

 I also flew home, which was an adventure in pain and lack of endurance.  Luckily I just upped my meds to get through it and have already mostly forgotten the whole ordeal. 

The girls roughly 15 minutes after arriving home.  

 The next day was Easter and my wonderful extended family did all the cooking and came to my (parents') house so I could participate.  (Everyone is either vaccinated or quarantine or both.)  I sat up at the table for brunch and had conversations and everything.  And then, that evening, I took my last nap.  At least it was a REALLY good nap.  

The Long Haul

Which brings me to the next part of recovery, which is the hard part.  This is where I'm in it for the long haul, often get frustrated, and go a bit bonkers from all the medication adjustments.   It's also where I see the most improvement and have the most joy as I get back to "normal" life.  It's complicated.  Like life, but more acutely.  

The day after Easter, I started going down on meds which is supposed to totally not have any withdrawal effects because of how small my doses are and how short of a time I'm on them and how slowly I go down. 

 Nope.  Lies.  All lies.  

Instead, as I described it to my dad, "My brain is marinating in crazy juice and I have no filter.  Good luck."  My parents would not be remiss in investing in a good pair of headphones or earplugs.  Coping mechanisms that are usually great?  All the CBT you've worked on for years?  Tending to be a rather stable and happy person?  Yeah, guuuubye to that!  Instead my brain becomes a constant stream of agitation and I get in thought spirals which are really unkind to myself.  Things like "lazy" and "I'm sorry" and "why can't I just..." come up a lot.  

This was coupled with what I considered to be a much slower recovery than I had planned for myself so far.  The first week home was rough.  I basically couldn't use my hands due to moderate to severe nerve pain. I wasn't improving in my ADLs or IADLs because hands are sort of important for most of those.  I definitely couldn't do art, but I also couldn't even really use my phone or other electronics for longer than a few minutes at a time. 

Bad hands!  You are in time out!

 I basically could listen to podcasts or watch TV.  So that left me having way too much time for my crazy juice marinating brain to ruminate on how my body wasn't cooperating with my very competitive ambitions.  It was tons of fun and I was tons of fun to be around, I'm sure.    

My "first weeks home" aesthetic 

My endurance was atrocious with "walks" sometimes only lasting a few house lengths and me having to spend a couple hours recovering afterwards. 

Yay, I made it six houses.  Now I need to go lay down for a few decades.

  Also, all the layers I'm wearing are because my neck is very sensitive to cold.  Even in ambient room temperature, I'll start getting major muscle cramping.  I basically live on heating pads and bundled up, even when it's warm outside.  I wonder what the neighbors think.  I don't care, but I do wonder.  

Things started coming together for me around week three post surgery (which is pretty typical).  I regained the use of my hands and to some extent, my arms for longer and longer periods of time.  My brain chemicals balanced out from that round of going down on pain meds.  My pain became much more manageable.  My endurance for sitting skyrocketed.  Even though I still "failed" many walks, I was reaching distance goals most days.  

Yay I finally made it down the whole street to the park!

And because my memory is terrible right now, I got to celebrate this "first" twice!

And had a freak energy spike and made it AROUND the park one day!  There was much rejoicing.  (And now frustration because I haven't managed to replicate this achievement since.)

Even though I still have times when I "literally can't even" and need lots of assistance, I have more times when I am reaching ADL, IADL, and exercise program goals.  (I also wanted to write that I am being less competitive about things, but then I reread this paragraph....  On that same note, I lost my fitbit.  I had just deemed myself responsible enough to start counting steps without going crazy about it and my fitbit just disappeared off my wrist later that day.  Like I have no memory of taking it off, let alone where I put it.  It was just there....and then gone. Maybe the universe is trying to tell me that I'm incapable of being only a healthy amount of competitive.)

Update: Week four has been a bit more difficult, but I'm still doing well all things considered.  My angry nerves flared back up as soon as I started trying to do things other than walking or sitting in bed, so I'm back to being pretty limited in what I can do.  And since it's nerve pain, it has the lovely habit of not hurting while I do the thing that angers it, and instead all the pain catches up to me a few hours later.  So it's really hard to gauge what I can and can't do which interferes with function and therapy.  As I feel better, I get more vain too.  I'm none too pleased with the additional steroid weight I've gained, or how the meds make me break out and have the dreaded steroid "moon face."  I'm starting to notice things like when my hair is a mess or my outfits way overproritize comfort over presentation.  I think the less I come in contact with mirrors the better for now.  haha  

 But on the bright side, I'm getting more consistent with walking.  I "fail" less walks and can make it around the block most attempts.  That's a good distance baseline for now.  My endurance is definitely still improving for both sitting and walking and hopefully soon, for (COVID safe) outings.  My balance, which gets kind of off after every fusion because of the new way my body moves, is much better and I'm much better at eating without dropping half my food back on the plate as I get used to my new neck position.  I'm progressing in PT and needing less help throughout the day.  I've gone down on meds a couple more times and navigated the resulting crazy brain a bit better.  I even went on my first outing to visit my grandparents with my brother and his fiance!  Everyone agreed that it was the healthiest they'd seen me in a VERY long time.   

That's kind of where I am now.  Life is still small, but already bigger than it was pre-surgery and continuing to grow.  I vacillate between celebration and frustration as I navigate the bumpy road of recovery.  It's definitely not linear, but the trend is overall a good one.  And if it all goes well, and I put in a lot of work, in five to twelve months from now I'll be in good shape (for me) and, fingers crossed, ready to get back to "real life" whatever that will look like.  I'm hoping for walking two miles a day, going to work part time, and being able to travel again.  But really anything that's not laying in bed most of the day is pretty awesome!

And for fun and as a thank you for getting through this ill-proofread post, here's some pictures of my dog "protecting" me while I rest.  It's her fun new hobby she's picked up since we got back home.  

Vaccinated! What it's like to get the COVID vaccine.

I am extremely fortunate to have received both doses of the Moderna COVID vaccine.  Since it's been a little over a week since my second shot, I wanted to share my experience for people curious about the process or side effects.  This is especially true for people concerned about getting the vaccine while being chronically ill.  For the record, I am in overall pretty poor health right now and have several chronic health conditions such as anaphylaxis/MCAS, Ehlers-Danlos, dysautonomia, adrenal insufficiency, and spinal cord injury.  

Basically, the whole process was simple and efficient once I got over the barriers of finding out if I qualified and how to sign up for an appointment.  (I recommend checking your local government's website to find if/when you qualify.)  Checking in for both appointments was quick and easy with excellent accessibility, COVID precautions and crowd control.  I don't think either time took more than an hour even with needing to wait extra time in the post-shot monitoring area because I have a history of anaphylaxis.  Every single person was really nice and helpful.  

I had zero side effects from the first shot.  Zero.  My arm wasn't even sore.  I did not need to take any medications, or increase my dose of medications. 

I did have some uncomfortable side effects from the second shot, but nothing horrific or dangerous.  As recommended, I did not premedicate with tylenol or anti-inflammatories in anticipation of having symptoms.  I did increase my basal rate of solu-cortef by 5% starting the morning of my second shot.  (My body doesn't make its own cortisol so I get it through a medication pump and have to constantly adjust my dose.)

Initially, I just had arm soreness which wasn't a big deal.  But almost exactly two hours after the shot, I quite suddenly developed a headache, got really congested, and felt flu-ish.  Over the next couple of hours I developed a low grade fever.  I had planned to garden, but didn't feel up to it so relaxed the rest of the day instead.  By that evening, my fever was going up and I was getting really uncomfortable, so I took tylenol with dinner and again later that night after the first dose wore off.  I upped my solu-cortef basal rates too.  With those adjustments, I kept my fever below 100.6.  Not too bad!

The next day, I still felt like I had the flu.  In terms of severity, I would put it at less than swine flu, slightly less than mono, and about the same as my reaction to the yellow fever live vaccine.  Even though I felt pretty bad, I was actually more functional than usual due to the increase in steroids reducing my chronic illness symptoms.  I puttered around the house and took it easy and was glad that I had already canceled everything I had to do that day.  There may have been some bitter complaining and feeling very sorry for myself too.  Maybe.  

   That night was the worst for me.  Even with tylenol, I felt terrible and the headache was really bad.  Like lay in bed and can't do anything level of feeling bad.  Luckily, I was so exhausted that I fell asleep early.

The next day, I was achy, tired, and had a manageable headache.  I didn't need any tylenol and I was able to lower my basal rate of solu-cortef a bit.  I still only felt up to lazing around the house.  That is until around 6:00 that night when I quite suddenly felt all better.  Just like that.  The symptoms left as quickly as they came on.  

I had a slightly sore/itchy arm and needed a slightly higher solu-cortef dose for a few days after, but otherwise was fine.

Overall, the few days of feeling fluish was a small price to pay for being vaccinated.  If I didn't know it before, being able to hug my (also vaccinated) grandpa on his 95th birthday really brought it home for me.

10/10 would recommend.  Please get vaccinated as soon as you qualify!  And please feel free to reach out with any questions!  

**None of this is medical advice.  Just my experience.**

The Importance of Having a Medical History

   As a complex chronically ill patient, and as a healthcare professional, I have learned that providing doctors (or therapists) with a well organized and concise medical history can be an absolute game changer.  Figuring out what to include in that medical history and how to organize that information can be challenging though.  

   I've had over a decade to fine tune how I organize medical information and I thought I should share my methods in case it helps anyone else.  

Everyone (yes even healthy people!) should have a one page medical history that they carry with them and bring to each appointment.  If you are a complex or chronically ill patient this may be one page front and back.  It should include:

1. -A heading that includes your name, contact information, and your date of birth.
2. -General information like your age, sex, gender, marital status (if any of that is relevant).
3. -Contact information for your doctors, pharmacy, and emergency contacts.
4. -Medication list including the name, dose, frequency, and reason for taking it.  
5. -List of your diagnoses including when you received the diagnosis and who from.
6. -List of any major surgeries, hospitalizations, accidents, etc.
7. -List of allergies/intolerances including medications, environmental, and food.

I created a free medical history template that you can use here.  You can copy and paste it into whatever you use for word processing and edit it to reflect your history.  Check out some of my comments where I give additional explanations or tips.  

The benefit of having a medical history is that health care workers can get a good overall picture of your case in a quick and accessible manner.  (And they will love you forever for making their job easier!)

Here is a preview of what my medical history template looks like:

Do you have any tips?  Let me know in the comments! 

                 

 

Theme Park Survival Guide - Planning Your Trip

School's wrapping up, the weather is getting warmer, and the radio is full of ads for theme parks.  Whether it's an afternoon at your local waterpark or a big Disney vacation, theme parks provide unique challenges for those with chronic illness.  Do these challenges mean we can't partake in this warm weather activity?  Of course not!  With a little planning and flexibility, theme parks can still be a fun part of your summer.

What does a perfect day at the park look like to you?

Are you caught up in the energy of bustling crowds or do you prefer breezing through short lines?  Are you envisioning yourself in a tank top or a sweater?  Do you want to spend a full day at the park, or cram as much fun as you can in a few hours?  Are you all about the thrilling rides?  The food?  The parades?  A perfect day will look different for different people, so it's important to know what your goals are.
 
Once you know that, use this post and you own research to figure out what you'll need to get as close to the perfect day as possible. 


When to go

Different parks will have different peak times, hours of operation, temperatures, and special events that may play a part in when you want to visit.

As much as I think summer when I think about going to theme parks, I personally find I do better when I go in the cooler offseason.



Weather

If you are going to a local park, odds are you will have a good idea of what to expect from the weather.  But pay special attention if you are traveling.  For example, one would think that going to the San Francisco Zoo in the summer would be a sweltering experience, but with the fog that comes in, you'll be more likely to wear a hoodie than a tank top!

Personally, I do ok with weather systems and pressure changes, but I'm not so great at tolerating heat and humidity.  So when possible, I plan to go to parks during cooler months.

Sometimes VERY cold months!

Here are some quick links for average temperatures at some top US theme parks:
-Disney World
-San Diego Zoo
-Universal Studios Orlando
-Universal Studios Hollywood
-Disneyland

Crowds

   Crowds can be exciting, but visiting a crowded park can lead to extra challenges.  Crowds mean a bigger chance of being bumped into, more sensory stimulation, and longer wait times (even with accomodations).

  If you have some flexibility, you can use apps or websites like Undercover Tourist to plan your trip for less crowded days.

Here are some crowd projection calendars for some popular destinations:

-Disney World
-Disneyland
-Universal Studios Hollywood
-Universal Studios Florida
-Six Flags Over Texas


You can use up to date apps and websites like Is It Packed to help plan what time of day to visit the parks.  This can be very helpful in determining when to take rest breaks to avoid the most crowded part of the day.

Special Events

  Most parks have special events that may be seasonal or catering to special interests.  The special events may be organized by the park, or by groups deciding to get together on a particular date.  These events may increase crowds, but they can also provide a unique experience with networking opportunities, unique performances, or special decorations.

Here are some special event guides:
-Southern California Parks 
-Orlando Parks

Also keep your eyes peeled for some fun unoffical events like a Cosplay Day or Gay Days.

Types of Tickets

If you are visiting an area that is dense with theme parks, there may be special ticket options worth looking into.  Generally, single admission tickets are least expensive and park hopper tickets allow more flexibility.  If you are going to multiple parks, it may be worth it to get a package like Southern California City Pass.



Just like in most areas of our life, some good planning can help ensure a great theme park experience.  See future blog posts for tips on what to bring, how to cope with some challenging aspects of theme parks, and plenty of personal anecdotes.

Have a question?  Did I miss something?  Comment below!

Taxi To Position and Hold

I swear the excitement over this trip is making me slightly bipolar.  I'm wildly excited most of the time, but then I also will freak out or get upset over silly things.  (Sorry family!)  I'm just not used to the huge range of emotions that is involved before this trip.  It is almost like I'm going off to college all over again because everything will be so new.  I have that same anxious feeling of just wanting it to begin already.  Luckily, the positive emotions are winning most of the time.  :0)


I am finally 100% ready to go in terms of paperwork which is a huge relief.  I guess the doctor who is going on the ship read my medical history and was really worried about me going.  I talked to him on the phone and eased his fears, but he said that the paperwork still needed to go through a few people before I was cleared to go on the trip.  (He is a wonderfully nice guy by the way.)  I was not worried about having my acceptance revoked, but I guess my parents were.  I didn't really think about it much because that option was too horrible to contemplate.  Luckily, as of yesterday, I must have passed the final steps because every entry on my status page has a beautiful green "OK - Received" next to it.  As my dad said, I can now taxi into position and hold.  


The last big headache is getting enough meddies to last me the whole trip.  The local pharmacy, mail order pharmacy, and my insurance company can't seem to agree on how I should go about doing this.  My poor mom and doctor have spent hours already trying to figure this out and I am still med-less.  I'm sure I will have everything by the time I leave (yay optimism!) but we are cutting it close.  Moral of the story here being to start the process way ahead of time if you need to order extra medication for extended travel.




9 Days!!!!!

The Opportunity of Adversity

I stumbled across this fantastic speech when searching for travel-related TED talks.  It's called "The Opportunity of Adversity" and it's a must see!  Even though it isn't specifically travel related, I feel that it shares the spirit of this blog.

Click here to see video

T minus 34 Days and Counting!

     First of all, a little update on my first world problems.  :0)  I finished finals and am almost done with my grad school apps.  I can't wait to click the submit button and get some quality family time in during the holidays.  I've pretty much  been a grumpy hermit locked in my room trying to get everything done, and am really missing out on spending time with them.  Almost there!

My awesome family just for the record. 

      Now onto the real stuff.  I wanted to share this awesome program I get to take part in during the trip called Vicarious Voyage.  Usually SAS sailors get paired up with a classroom to correspond with during the voyage.  I'm doing things a little differently (what's new) and have been paired up with a group for chronically ill kids and young adults instead.  I'm really excited because it's never been done before and I think it will work out really well.  One thing most people don't realize about being sick is that it is way stinking boring.  I would read travel blogs during my bed-bound days and it helped pass the time.  Now I'm hoping to give back.  (No way to make that sound less corny...)  The group I chose was, of course, the Dysautonomia Youth Network of America.  I've been a part of the group since my own dysautonomia diagnosis in 2008 and will really enjoy working with them.  One more excellent thing to be excited about.

     Just really quick before I sign off to finish those grad school apps, I wanted to let you know that you can subscribe to my blog via e-mail!  (You don't have to be a blogger member to get updates.)  There is a box on the right hand side under the blog's archive where you can sign up.   

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My First Post!

Even though I don't set sail for a little under three months, my Semester at Sea (SAS) journey really started over four years ago. I'll start my blog there to help put things in perspective. :0)



I first heard about SAS from another vendor at a study abroad fair during my sophomore year in college. As I was touring the various booths, the SAS brochure jumped out at me. I talked to the representative at the booth and knew within a few minutes that I would do everything possible to get me on one of those ships someday. The representative was really nice and gave me one of his last DVD's since I was so interested. I remember calling my mom later that evening and saying how much I wanted to go on the trip. I knew it would be a difficult thing to accomplish, but I didn't know yet just how difficult.



Four days after I first heard about SAS, I found myself in the emergency room with what I thought was a strange flu. After many tests and doctors appointments over the next few days it was discovered that I actually had suffered a stroke. As you can imagine, I was quite shocked since up until that point I was a healthy and energetic student and competitive soccer player. I found out that the stroke was due to a hole in my heart which I had closed through a fairly simple procedure on Halloween, 2007.
Though the procedure was a success and I have not had any more strokes, my health continued to deteriorate. At one point I was so weak and uncoordinated that I needed help to sit up. I remember watching the SAS promotional DVD and crying because I thought I would never be able to do something like that now that I was so sick.



Over the next several years (and MANY doctors/hospitals) I found out that I had a genetic condition called Ehlers-Danlos Syndrome which causes the collagen in the body to not work right. This set me up for frequent injuries (usually joint dislocations) and vascular complications including the hole in my heart that led to the strokes. I also found out that I had a condition called dysautonomia which is where the autonomic nervous system does not work correctly. With the help of hard work and up to 17 medications a day, I saw an excellent recovery from the stroke. Within just four months of the stroke, I was walking short distances and had good enough coordination that hardly anyone would notice anything was wrong with me. The dysautonomia symptoms became my main hinderance because I felt like I had the flu or was about to pass out most of the time. I also began to have episodic weakness and seizure like episodes (I would shake but still be fully conscious.) Daily life was an enormous struggle, but I was able to back to school and continue my rehabilitation exercises. I was still in my wheelchair about 80% of the time when I left the house/dorm, but I did see slow improvements in my endurance and ability to stay upright without blacking out.



Through all this, I still kept studying abroad in my mind. I signed up for a summer program in London but was not able to attend due to complications from a digestive surgery. This was a huge blow, but a few months after I would have been studying in London, I began to casually look into other study abroad programs. I emailed and called countless offices inquiring about the accessibility of the program. Only one program got back to me with a response other than, "You can't participate in this program," and that was Semester at Sea. I learned that many students with mobility impairments and health conditions have successfully traveled on the ship in the past and that the shipboard lifestyle would work well with my limitations. For months I was going back and forth with the decision to apply. On one hand, I knew that it would be the trip of a lifetime and probably the only chance I would get to see some of these places, on the other, my doctors did not think I should go and my parents needed much convincing. I looked up to the later group as the people who got me through the last few years so it was very difficult for me to not just go along with what they suggested. I finally made up my mind that I would go and submitted my application last summer. It was a huge relief that the decision was made and I set about giving myself every opportunity to be successful on the trip.



One of the avenues I pursued to make my health more stable was looking into cutting edge medicine for my conditions. Not long after I applied, new research was released that suggested that most of my more frustrating symptoms could be caused by defects in the veins in my neck. I already knew I had the defect mentioned (formerly called chronic cerebrospinal insufficiency or CCSVI) so I scoured the internet looking for doctors who were treating this. I was lucky enough to find such a doctor almost in my own backyard. I sent him my medical records and he agreed to take me on as a patient. Two days before my 23rd birthday I had the appointment where he told me that the CCSVI could be causing all of my problems (except for the underlying genetic disorder) and that I could see a great improvement in my health if I had the surgery to fix the veins. I of course opted for this experimental treatment and had the surgery within a month on October 14, 2011.


This brings me to today where i can say that the surgery was an enormous success. Within two days after the surgery I was better off than before, even though I was still technically recovering. I have enjoyed spending the last couple of weeks with greatly increased energy levels and ability to remain upright. My wheelchair has been collecting dust unused in the back of my Mom's car. Though I was already committed to making SAS work, this new improvement will allow me even more opportunities. I still am not completely healthy but I have the next three months to continue to improve and am determined to use the adaptability that I have learned from the past four years to successfully travel with SAS.



Just the process to apply and get ready for SAS has been a thrill and a bit stressful. As the trip gets closer and I get more excited, I wish time would speed up and get me on that boat!



Too Long Didn't Read Summary: I got REALLY sick four years ago. I'm healthy enough now that I will have the amazing opportunity to travel the world via Semester At Sea. My health and mobility impairments will provide challenges, but I know that I am ready to take them on.



I also want to thank many people who have made this trip possible. I'll do my best to not make it sound like an acceptance speech...actually I don't think there's any way around that. haha I want to thank my family, especially my parents and brother who have encouraged me to pursue my dreams (once I convinced them that I would be safe). Without them I would not have gotten through this illness, let alone have the confidence and means to travel with SAS. I also want to thank the generous donors who have provided several scholarships that makes this trip possible. I want to thank the wonderful doctors and health care professionals who have treated me and helped me through some pretty rough times (especially Dr. Madej, Dr. Banks, Dr. Brown, Dr. Dake, Dr. Driscoll, Med Stop Urgent Care in San Luis Obispo, and the team at Mayo.) I want to thank the wonderful people who I have met through International Club (and Honors Program) at Cal Poly who inspired me to be a citizen of the world. I want to thank the Cal Poly Disability Resource Center (especially Jennifer) who not only helped me get through school, but also helped me research study abroad options and taught me how to be a strong advocate for myself. I want to thank my professors who went above and beyond with accommodations to help me get through school. Finally, I want to thank my amazing friends, spoonies, and DYNA family for always being a positive influence in my life and cheering me on. Without them I wouldn't be where I am today. (Which is a pretty awesome place, by the way.)